posted
Hello all, has anyone tried this or heard of it. Supposedly,it is an injection once a week, of a certain kind of protein, that destroys any immune defeciencies. They have been using it in Europe and Japan, there have been several case studies showing it cures both of these. They just started to use it on lyme patients, it they say they are having 100% sucess with it. My Dr. has shown me all the research and wants me to order it. How do I know it works, how do I know I'll get it, how do I know its not fake. Seems really sketchy to me??
Posts: 80 | From scottsdale | Registered: May 2011
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GiGi
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GcMAF is the most exciting thing that has come down for any of us or family with a chronic ailment that doesn't seem to totally want to go away or never goes away.
Read it and explore it.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
This is something I am so, so interested in and want to do and will discuss with a new LLMD next month.
Better Health Guy, just recently wrote about this issue I think a week ago. I think this is promising for some, especially like me, who is immune deficient and have been on abx for 2 ys now.
I have tried all sorts of herbals...have seen some improvement and still neutropenic, low nk cell funct . and a cd 57 of 10. Im so ready to try this.
I have rec'd neupogen iv in the past for my low wbc ct. and it was not that bad and I think the dose is even lower that what I got.
Posts: 151 | From south east | Registered: May 2010
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posted
I know where you can order it, but there are so many fakes out there, you never know if its worth it. Also, I have read that if it is real, the postal service has been stopping it from going through customs. Sooo confusing?
Posts: 80 | From scottsdale | Registered: May 2011
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Tammy N.
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I'm definitely interested in this. But is sounds like this is a product that comes from others' blood? These types of treatments always make me want to research further. Don't want to solve one problem, but unknowingly acquire another.
Anyone else have further info?
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Dr K not only mentioned GCMAF last week, he said using it he no longer needs to use ABX. Thus reducing all the issues that go along with ABX.
This is a very exciting breakthrough. I will be taking it to my LLMD next week and if he does not for it I will take it to my DO. Now if my DO does not go for it well I'll go to my other DO and if ... can you relate?
All the Best, Matt H
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
FYI...according to better health guy, before you start the GcMAF, you need to have your nagalase level checked.
There is a lab in NJ, that specifically does this, and if your nagalase level is elevated, you can be a candidate for GcMAF.
With the injections, your nagalase level should decrease and should be monitored throughout treatment.
I have ordered the nagalase kit through my doc. office. So should be interesting. I think, as well, you can not be on Art. for a certain amt. of time before drawing this nagalase level.
Posts: 151 | From south east | Registered: May 2010
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posted
Does anyone have any thoughts on fakes?? You have to get it from Europe or Asia, what abt customs?? It has to stay cold, that's a long way to go? I'm not trying to be negative, I just want to make sure I get the real stuff. I'm very excited abt it too. Matth, is Dr. K actually giving it to patients? Where does he get it??
Posts: 80 | From scottsdale | Registered: May 2011
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SForsgren
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http://gcmaf.eu is the only source of GcMAF that has been independently assayed as far as I know.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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James1979
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posted
Scott - thanks so much for keeping us updated on your GcMAF treatment! I'm following your website via RSS and Twitter now to make sure I get the news on how you're doing. I think it's awesome when people document their treatment plans, because it helps out so many people.
According to the website, you have to have your doctor submit a request. The price is on the website too. So would think that this is the only place to get it.
Dr K talked about abx and combinations depending on the individual and then said (I am paraphrasing), "but we don't use or need abx now that we are using gcmaf."
But he did not say if the gcmaf did anything for CCVSI. And I think based on his discussion of CCVSI and how he says a great percentage of chronic lyme patients have a CCVSI issue that it may not.
There are notes posted from the call in session last week and he gave other treatments for CCVSI. What I find interesting is that there is considerably more discussion amongst the doctors about Lyme and CCVSI.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
Yes, Dr. K's clinic is starting to use it with patients. Patients order it from the source Scott listed above. (Thanks for your awesome blog post btw Scott -- really helpful.)
At the clinic patients are tested first for nagalase levels and also Vitamin D. Apparently if Vit D is too low, this treatment won't be effective -- or atleast "as" effective.
I was tested recently and just learned that my Vit D levels were too low, so I'm supplementing for now to try to raise them. I'll learn about my nagalase levels in a few weeks. If I'm a candidate, I will likely get started with this therapy.
Posts: 232 | From Oregon | Registered: May 2010
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posted
Scott, do you mind giving us the web address for following your treatment? I'm very interested.
Posts: 80 | From scottsdale | Registered: May 2011
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SForsgren
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Actually, in the Dr. K call, someone asked about what to do if you had the CCSVI procedure and restenosed, and he did say that was time to think about GcMAF if I recall.
LymeAware (hi ) is correct that the Vitamin D levels are an important part of the GcMAF therapy. GcMAF.eu notes this in their instructions as well.
I would love to hear from anyone with Lyme that gets their nagalase testing done. I've only heard a few results so far, but I suspect almost everyone will be highly positive on the test. We'll see. It has been shown to be very common in autism already by one practitioner.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Well if CCSVI can be helped by GcMAF that would be great and I may have misheard Dr K's remark.
Wouldn't that be great if those that get the GcMAF improve their drainage in their heads if that is their issue!
Thanks Scott!
All the Best, MattH
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SForsgren
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I think what he meant was that part of the issue with restenosing is endothelial infections. If the GcMAF can lower the infection burden, then the CCSVI procedure may be more long-lasting. I don't think GcMAF itself will resolve CCSVI. Lots to learn still on both of these topics.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Hi Scott! I'll definitely try and report back when my levels come in and I hear. I'll be seeing my doc again in a couple weeks, so hoping we'll know by then. It's been exciting to read your postings on the subject -- looks very promising!
Posts: 232 | From Oregon | Registered: May 2010
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MichaelTampa
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My doc just told me about this yesterday. We'll be interested in trying, probably get the test done first.
The test could spare one wasting their time and money with this, as the test could indicate this therapy would not work. But, other than that, I don't guess the test is a necessity.
My doc thought no Rx was required to purchase. However, it does require an injection. My doc says it is as easy or easier than what the diabetics do regarding their injections, as it is a very small amount and not needing to go into a vein. (This is what my doc said anyway. He had just recently heard about this as well and was looking into getting some of his patients set up with it.)
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Does anyone know any LLMDs on the Mid-to North East Coast using this product for their lyme patients? PM me please. Very interested in it. Wish we had a Dr. K. on this side of the country. Thanks
SForsgren
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My opinion is that nagalase testing prior is an absolute necessity. If you don't have elevated nagalase, then there is no reason to do the treatment. If you do, it helps to create a picture of the pattern in people with Lyme relative to nagalase elevation. Additionally, nagalase is generally tested monthly during treatment to monitor progress. So, I do think it is important.
I don't know many doctors that are using this, but hopefully it won't be long before they start to get more information about this option and considering whether or not they will offer it to their patients.
I don't think the treatment is without some potential challenges though - inflammation being the most signficiant that people seem to experience. It will take time to see how people in the Lyme community respond to it both in terms of during and after therapy.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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James1979
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Gigi - that's absolutely amazing that you're gonna be 80 soon. Your brain seems to be working at 100% efficiency! Thanks for helping us all out like this.
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Thanks for your post. We are all wondering if it will work us and your insight is invaluable.
What about abx, should that be continued at least during the first 3 or 4 weeks?
Do we continue the long list of supplements and binders?
If these questions are premature, I understand.
All the Best, MattH
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susank
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Exciting. I need to read more. I have no idea what is CCSVI?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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MichaelTampa
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Do a few searches on ccsvi here over last few months (they are rare but worth reading), and wiki has a nice write-up on ccsvi as well.
I am one of those who had angioplasty to correct ccsvi, just a little over a month ago. Very briefly, ccsvi is a circulation problem that is known to cause neurological symptoms, but I think correction is also important to help get good oxygenated blood everywhere to kill the bugs, because the bugs will hide out wherever they can.
There are ways of improving blood flow to the rest of the body parts, and while I believe ccsvi treatment is important, I bet we should not ignore the other body parts as well (such as limbs).
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MichaelTampa
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Gigi -- The 4 degrees above zero celsius is just above freezing. I haven't tested, but this sounds a bit colder than refrigerator temperature, and I wonder how you are storing the GcMaf and how carefully you are measuring temperature.
I think I'll be getting going pretty soon on this, and just trying to figure out how to handle this.
Posts: 1927 | From se usa | Registered: Mar 2010
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MichaelTampa
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Just got a call from my doc, he also said the frig should work ... that's nice. Yes, he said it can be easier than what the diabetics use. I'll mention the tuberculosis syringe idea to him.
Very excited about this, yes a good sign about the blocking-unblocking!
Sounds like Dr. K. may have mentioned this idea publicly recently. My doc heard from someone who is one who hears about Dr. K. ideas. Curious if this idea is now popped up in U.S. due to Dr. K. or someone else. Grateful there are people like Dr. K. actually working on great new ideas, we certainly can use some!
Posts: 1927 | From se usa | Registered: Mar 2010
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SForsgren
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Please don't assume this therapy is without risk and potential side effects. Read about IRIS (http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome). I had a 5 day inflammatory response this past weekend that seems to be almost assuredly related to GcMAF. That's why I don't think anyone should do GcMAF unless their doctor really knows what they are doing.
I'm now taking a week break and then will restart after things settle down a bit. I'm still very optimistic, but I think people need to be prepared for these responses to occur.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Tammy N.
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Hi Scott,
How are you feeling today? How are you handling/treating your inflammation?
I'm out here is Seattle. Doc recommended same treatment. Having Nagalase and D testing done. Headed back to clinic now.
Take care.
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SForsgren
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I'm doing fine. On several anti-inflammatories and not back to 100%, but it's well on the path to resolving. I'll wait about 10 days before doing another injection and waiting for my nagalase retest results which were just drawn this week.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
scott: what anti-inflammatories are u taking to assist w/iris effect?
gigi: does dr k think gcmaf will help w/cavitations.....i have had 7 surgeries and none have helped....still pain and inflammation.
Posts: 92 | From berkeley, ca, usa | Registered: Jan 2005
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SForsgren
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BW A-INFLAM, Metagenics UltraInflamX, Nano Curcuminoids, plus drainage and detox. Mostly resolved at this point.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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quote:Originally posted by GiGi: Friends in the field are blown away by it. It cures cancer, ALS, MS, Lyme and autism.
I've seen LN members desperately try so many drugs/substances/procedures over the years and the reality is nothing works - there is no cure. I'm skeptical when I see statements such as these using the 'C' word.
Posts: 655 | From USA | Registered: Sep 2007
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if i were to consider this treatment, how high should my levels be?
or just to continue supplementing is fine? (i am using D3 drops @ 4000iu per day)
Posts: 8337 | From the other shore | Registered: Jul 2002
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SForsgren
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70-100 is ideal. Most people have to take supplemental D while on GcMAF.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Interesting stuff. I hope those on GcMAF do well. I have taken it, but my Lyme symptoms are mostly resolved. I've written a quick write up on it on my blog. GcMAF is not temperature stable, so be sure to refrigerate quickly. Unfortunately, at this stage, I would still consider it very experimental for Lyme. Best of luck.
Posts: 261 | From Washington | Registered: Oct 2002
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CD57
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How much does it cost? I think I read something like 10k?
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CD57
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How long must one do this therapy? It is not a forever thing, is it? Maybe 4-6 months?
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GiGi
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You will find some interesting reading. Be sure to read through all the links. It is not terribly technical, but should answer all your questions. I am not the sharpest, but it all became very clear to me how it works and what to expect.
Best to you.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
Scott, I'm sorry to hear that you had the inflammatory reaction! Does not sound like fun. But, also very interested to hear, as I know we have all been wondering about potential complications. I'm glad you are feeling better now -- I hope you'll keep us updated.
Mo -- My doctor's office said that Vit D should be atleast 40 for the GcMAF to be effective, and they started me on 10,000iu per day. (My Vit D was 21.) I'm not sure whether they will wait for my levels to get to 40 before starting or what, as we haven't gotten my nagalase test back yet, but I'll know more in a few weeks.
CD57 -- I've heard that the cost is around $400-$450 per month, and no it isn't a forever thing.
Posts: 232 | From Oregon | Registered: May 2010
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i should supplement at a higher amount, just my pcp ran this, so they only said to take 1000iu a day.
GcMaf, i assume is not covered by insurance, however, is it only LLMD's using the treatment, or general/other specialist MD's as well?
i have the same question for CCVSI.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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SForsgren
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I have heard that the ideal Vitamin D level for GcMAF is 70-100 and most of us will need Vitamin D supplementation while using it. I am on 10,000 IU as well and have been for quite some time. My most recent D level was 97.
I think as long as you are taking Vitamin D, the level is less critical, but I'm not certain.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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When you say especially if using enzymes what do you mean?
"I do not think we can get away without adressing CCSVI. Limited blood perfusion into the brain is a problem and Dr. K. refers to Lyme as the disease of the endothelium. I think the swelling legs/ankles/feet is a part of this, especially if using enzymes."
I am in the process of addressing CCSVI. I do have the swelling but it has gone done since I began using nattakinese and serrapentase.
All the Best, MattH
When you say
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
Gigi, when you say "The Epstein-Bar and the different Herpes are nasty, E-Coli, and many more - are not safe any longer."
Does this mean that GcMaf is also effective against Herpes viruses and e-coli?
Also, I wanted to get my nagalase tested, but I must have my doctor's license number. Can I just order a test without a doctor's involvement?
Thank you so much for sharing your story - hope your hubby bounces back, and this is a "miracle cure". I've learned so much from this post, and others from you.
Posts: 964 | From san diego | Registered: Oct 2009
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Serum vitamin D3-binding protein (Gc protein) is the precursor for the principal macrophage-activating factor (MAF). The precursor activity of serum Gc protein was lost or reduced in HIV-infected patients. These patient sera contained alpha-N-acetylgalactosaminidase (Nagalase), which deglycosylates serum Gc protein. Deglycosylated Gc protein cannot be converted to MAF and thus loses MAF precursor activity, leading to immunosuppression. Nagalase in the blood stream of HIV-infected patients was complexed with patient immunoglobulin G, suggesting that this enzyme is immunogenic, seemingly a viral gene product. In fact, Nagalase was inducible by treatment of cultures of HIV-infected patient peripheral blood mononuclear cells with a provirus-inducing agent. This enzyme was immunoprecipitable with polyclonal anti-HIV but not with anticellular constitutive enzyme or with antitumor Nagalase. The kinetic parameters (km value of 1.27 mM and pH optimum of 6.1), of the patient serum Nagalase were distinct from those of constitutive enzyme (km value of 4.83 mM and pH optimum of 4.3). This glycosidase should reside on an envelope protein capable of interacting with cellular membranous O-glycans. Although cloned gp160 exhibited no Nagalase activity, treatment of gp160 with trypsin expressed Nagalase activity, suggesting that proteolytic cleavage of gp160 to generate gp120 and gp41 is required for Nagalase activity. Cloned gp120 exhibited Nagalase activity while cloned gp41 showed no Nagalase activity. Since proteolytic cleavage of protein gp160 is required for expression of both fusion capacity and Nagalase activity, Nagalase seems to be an enzymatic basis for fusion in the infectious process. .Therefore, Nagalase appears to play dual roles in viral infectivity and immunosuppression.
Also, How do proteolytic enzymes affect nagalase? I can't tell if one should uses systemic enzymes or if they are contra-indicated.
Posts: 964 | From san diego | Registered: Oct 2009
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GiGi
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Baileypup,
"Does this mean that GcMaf is also effective against Herpes viruses and e-coli?"
Yes, it is. Please read every word on the GcMAF website. You will find many answers.
These other unknown underlying critters that have plagued so many of us do not have a chance once GcMAF moves into action.
You can call Healthy Diagnostics and have them send you the Nagalase test kit. Find a friendly doctor to draw blood, etc. as needed and send it in. Follow the freezing instructions carefully. Call FedEx and arrange time for pickup at your house and send it in still frozen on the right weeksdays. All in the test instructions.
Learn to tensor or muscle test or any testing that will give you answers to some of the puzzles that appear when you are killing/detoxing, etc. Tensor testing helps me keep my sanity! I don't always have an ART doctor at the waiting and the body changes throughout the day having different needs. There are other methods you can learn. Be open to it. It can be learned - with a little patience.
Best to you.
Posts: 9834 | From Washington State | Registered: Oct 2000
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CD57
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Hmm. Is the idea to get the nagalase down and then discontinue the therapy? Not sure what the end point is here.
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GiGi
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posted
The expected endpoint is that people eventually get well. The reason we are still not getting totally back to normal even after years of abx is because we are dealing with so many mutations of infections which we are not familiar with or can't find or treat. GcMAF starts dealing with them in a very natural way.
Reading the complete website, every link you can find on that site, will help clarify things for you. Nobody here on the board can give you a flat yes or no answer. All is relative. www.GcMAF.eu
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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SForsgren
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Yes, once nagalase is down and the immune system and macrophages are "activated", there is no thought that ongoing GcMAF therapy would be required. After 4-6 months and confirmatory nagalase testing, that should be the end point for this treatment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CD57
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Other than the temporary inflammation, are there any downsides? I can't find any on these sites.....
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GiGi
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If it causes increased inflammation, as in a herx, most people with ALS/Lyme will not be able to take this treatment.
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SForsgren
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You can titrate the dose to attempt to avoid symptoms. Take more -> more potential for inflammation. Take less -> less potential for inflammation. Since it is stimulating the natural immune response, I am not aware of a concern in terms of resistance, etc. as with some other therapies.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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susank
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What about MS? I am thinking of some friends.
I called my doctor's office today and am waiting for return call to see if they test/have any patients on GcMaf. I am very interested in it for myself as well.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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SForsgren
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I was told by a practitioner that GcMAF is potentially not a good option for MS and that there is some concern using it in MS patients. That said, I believe there are other sources of info that suggest otherwise. So for MS I'm not sure but do know that at least one practitioner recommends not using GcMAF in MS.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
so has anybody here actually had positive results from GcMAF for lyme?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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GiGi
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This is a list of some of the results from people using GcMAF.
The categories listed - Autism, XMRV - Lyme, Fibromyalgia, Chronic Fatigue Syndrome all fall into the Lyme category. Dr. K. has stated for years that all of his patients who come to him with these problems also have Lyme.
Take care.
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Rumigirl
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Could someone please PM me the name(s) and contact info for any drs who do this in the northeast---or east coast?
This is really exciting! If it pans out, it is just what the dr ordered! I've had to be off all tx for way too long, due to gallbladder/liver/pancreas problems from rocephin, etc., so . . . I need such a cure, if it turns out to be one.
Keep this thread going--or a new one as needed. Please, everyone who is doing this, keep us updated, so we have more specific Lyme & co's experience with this.
Thank you so much Gigi, Scott, and others!
Anyone who is doing CSVI tx, also, please keep us updated. On that note: what drs/clinics are doing that in the northeast or on the east coast?
And is it generally better to do the GcMAF first, and after some improvement, consider the CSVI?
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MichaelTampa
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I think the key thing before doing angioplasty for CCSVI is that have a pretty good handle on the biofilm and any accompanying bugs such that they will not clog things up again right away. Doesn't mean you've killed "all" the bugs or have a properly functioning immune system, but I would say suggest at least some bug treatments and lots of biofilm treatment.
Posts: 1927 | From se usa | Registered: Mar 2010
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When you say bugs are you talking about bacteria or parasites?
Also since your CCVSI, how are you feeling, noticable improvements yet?
Thanks, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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Rumigirl
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Does anyone know if you can do GcMAF if you are doing IVIG treatment on-going?
I have done IVIG for over a year with a number of stops and starts, and have started up again. But I really want to try GcMAF, assuming that my nagalese levels are high, which they are likely to be.
I noticed that there is a dr in NYC who is doing a study on it. I just hope that doing IVIG wouldn't disqualify me (do I have to mention it?!). I know that I was disqualified from another study once because I revealed that I have Lyme Disease!
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susank
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I wonder about testing and IVIG and Abx. My last IVIG was mid Sept. I assume it needs to be out of my system for accurate Nag. testing. What about Abx? Off of them as well?
Folks are having their Vit.D. levels tested through regular lab ie Labcorp and Quest?
Are there any other tests recommended for McMaf?
Seems to me I was reading somewhere in regards to GcMaf about people testing to see if they were "responders"? Things called "Fok".... Or was I reading something different? Tks.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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MichaelTampa
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Member # 24868
posted
When I said "bugs", I was more kind of thinking of bacteria, but I probably should have meant both. Bacteria will clog up the works, but the parasites will change your enzymes so that bacteria can do that. So, as I think about it, I would probably think treating both to at least a decent extent would make sense before ccsvi angioplasty.
Lesser sensitivity to emf's, somewhat more energy, and herbs fighting against the bugs are testing as much more useful. Nice things, and I think the treatment was very worth doing for me, but still, not a major improvement, and I think just much more work to be done.
Yes, I think labcorp/quest are fine for vitD levels, I get mine checked at Labcorp
Posts: 1927 | From se usa | Registered: Mar 2010
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Further: the immune system and auto-immune diseases. Immune system modulators etc. IVIG is said to be a modulator. Is GcMaf somewhat the same?
It is said that LD supresses the immune system. What lab markers show that?
I doubt most folks are having their Immunoglobulin levels checked. I have written that I am low/subnormal on IGG, IGM and IGA totals/subclasses. For sure that means a supressed IS. What other tests show IS supression? It appears GcMaf would be very helpful there to help the body fight diseases.
But what about hyper immune systems? If one has hypo and hyper? Hyper is autoimmune - ie the IS attacks our own bodies? How would GcMaf work in that regard? As a good thing - or throwing fuel to the fire?
For myself, I don't know if I have an auto-immune disease - unless it is Sjogren's - where my tests are negative. I do have highly elevated Immunoglobulin E levels.
I guess I am asking what possible health scenarios would make GcMaf a bad thing for some individuals?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
I don't want to be Captain Buzz Kill, but GcMAF is unproven. I compiled a list from a XMRV forum. Yes, some clinical improvements for sure. But wonder drug?
I have yet to read about a full clinical cure from GcMAF alone. I suspect years from now it will be seen as an important tool, but not THE tool. I hope I'm wrong....just not convinced yet.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
So would being on IVIG mean that I wouldn't get a true test result on the nagalese? And would it not be good to do both?? I know, it may well be that no one here knows, but any ideas? Thank you.
As far as the doubting Thomas's go, I hear you. Who knows why Dr. K is so fired up about it when it is so new and experimental, and the results have been so mixed.
I'm still interested in trying it nonetheless---if I can do both that and IVIG at the same time. But that may be over the top.
Posts: 3771 | From around | Registered: Mar 2008
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
For my perspective, I don't imagine anyone thing could cure lyme disease once set in for years. So I'm not looking or hoping for that. I'm looking and hoping for the missing piece(s). I've done many things and looking for what's missing.
Calling gcmaf an immune modulator sounds wrong to me, as it is simply feeding the immune system what it should be making. So, maybe an immune supporter, but hard to see it suppressing the immune system (modulating it down) if that were needed. Perhaps if the gcmaf will cause the body to attack itself more, that would be bad.
Apparently, nagalase is a lab marker for the suppressed immune system, as nagalase tells the body to stop making the gcmaf protein.
Good question regarding the ivig, don't know. Maybe ask the ivig experts/docs, if ivig includes the gcmaf protein, or macrophage binding proteins in general. And ask if ivig includes nagalase.
Posts: 1927 | From se usa | Registered: Mar 2010
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Dr K did seem extremely positive about GcMAF on the conference call. I went back and reread the notes, some of his protocols, and the CCSVI notes that Scott F put together.
So maybe he is fired up because this is a new and important piece of his protocol along with the Dr K Lyme Coctail, the detox protocol, the KMT, the reduction in EMF, and the other things he is doing. He also uses ART so he gets feedback on what the patient needs.
Since he is very foward thinking and has changed his protocols since he started treating heavy metals 15 years ago, he may see the GcMAF as a major piece of his puzzle that replaces ABX and allows him some room for other things that the ABX do not allow because of side effects.
So I think he may see this as a very complementary piece. What I do not know is, because we are all different, what else do we need to do along with the GcMAF. Do I keep doing the ABX (does not seem to be a downside but may not have enough info), current supplements (different supplements), CCVSI treatment and what else.
Do I question my LLMD who has had significant success about Dr K's protocol? Or do I need a little more patience to let the current protocol work?
One thing I find very interesting is that spiroketes love collagen. So can we use liquid HA to draw them out of the collagen in the joints and into the gut where they can be killed much easier? That's like using Amdro for fire ants!!! I am on abx anyway can I help it be more effective? Any thoughts?
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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) is correct that the Vitamin D levels are an important part of the GcMAF therapy. GcMAF.eu notes this in their instructions as well. 
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